Introduction

[Guest guest]

Hi Lee,

Welcome to the group. I've been a part of it since last May (was

diagnosed in June after I handed my doctor a photo of the Still's rash

that I printed off the web, pointed to my arms and chest and

said, " look familiar? " and asked for a referral to a rheumatologist).

If you're looking for a drug mix that might help you get your life

back, a lot of us are having good luck with the anti-TNF group

(Enbrel, Humira, and Remicade). Quite a few are taking Kineret with

great success. A lot of folks are on a " cocktail " of meds. Mine

includes prednisone, methotrexate, and enbrel. While I still have

some pain and some bad days, if I compare how I'm doing now to back in

June, it's night and day. I also do a lot of typing/computer work for

my job and have found that a low dose of vicodin every four hours

makes the hand/wrist pain bearable.

Nothing seems to work for everyone, so don't be afraid to try a few

different drugs until you find a mix that really helps, and definitely

do your own research unless your rheumy is already treating still's

patients (and even then, can't hurt to do it!).

Sounds like you managed to create a nifty creative work space for

yourself. I'm addicted to the Dog Whisperer (Cesar Milan) and only

wish that he would do some Cat Whispering too so I could figure out

how to train my sometimes psycho felines.

in Maine

>

> Hello. I'm Lee.

>

> I was diagnosed with Stills last July. I'm sure my story isn't all

that

> different from yours.

>

[Guest guest]

Hi Lee,

I thought I'd posted a " welcome " greeting a while ago, but it isn't

showing up so I'll give this another try! Welcome!

I'm fairly new to the group (diagnosed in June after handing my

puzzled doc a photo of the Still's rash that I printed off the net,

pointing to my chest and arms, and asking for a referral to a

rheumatologist). If you're looking for new meds that will give you

your life back, you might do some research into the anti-TNF group

(Enbrel, Remicade, Humira). Also look into Kineret--quite a few

members of the group have had great success with it. Most everyone is

on a cocktail too (mine's prednisone, methotrexate, and enbrel), and

finding the right mix seems to take a lot of time and constant

adjustment.

I do a lot of typing/computer work/writing for my work too. I'm

taking a low dose of vicodin every four hours to stave off the

wrist/hand pain so I can continue to work.

Sounds like you've been really creative in mapping out a career that

allows you some flexibility to deal with your health issues (plus

offers a wonderful second life for those racing greyhounds!). I'm a

huge Dog Whisperer fan (Cesar Milan) and keep trying to tell my cats

that I'm the pack leader, but they just roll their eyes and show me

repeatedly that I'm not.

I hope you'll find the group a good source of information as well as

moral support!

in Maine

>

> Hello. I'm Lee.

>

> I was diagnosed with Stills last July. I'm sure my story isn't all

that

> different from yours.

[Guest guest]

*Hi and Welcome to the Group, Lee.*

*I am sorry you have a reason to be however, I am glad you found us.*

*Your story sounds simular to mine and many others. You have came to the

right place. I'm looking forward to getting to know you better.*

**

* from Oregon*

> Hello. I'm Lee.

>

> I was diagnosed with Stills last July. I'm sure my story isn't all that

> different from yours.

>

> ------------------------------

>

--

SPEEDY :-)

" Love endures all things. "

[Guest guest]

Hello Lee and welcome to the group.I hope now that you have a correct

diagnosis,that the medications will work take care. d.Canada

Introduction

> Hello. I'm Lee.

>

> I was diagnosed with Stills last July. I'm sure my story isn't all that

> different from yours.

>

> In childhood (age 6) I was dx with rheumatic fever and kidney disease.

> I was confined to bed and hospitalized frequently over the next two

> years. I grew up in a small company mining town so there were no

> specialists. The rashes and fevers I had frequently were dx as German

> measles--of course one has to believe that I had German measles at least

> 10 times in six years.

>

> The symptoms came and went and and changed in terms of what part of my

> body seemed to be under attack. Regardless of the other symptoms, the

> fatigue and pain were always present during the flare. The episodes

> would last from months to a year or more.

>

> Over the decades none of the doctors I saw, including hematologists,

> gastroenterologists, urologists, ob/gyns seemed to have any answers. I

> was dx with hepatitis, migraines, IBS, thrombocytopenia, SADS, EBV,

> vWB, and a host of other things by various doctors at various times

> until I finally just gave up trying to get any answers in the mid 80s. I

> got tired of being treated like I was a head case. Since they couldn't

> find it, it must be in my head--right?

>

> My family doctor for the past 20 years was convinced that eventually I

> would test positive for RA or lupus because everything seemed to point

> to some kind of autoimmune problem. At least he believed I wasn't just a

> nutty broad. But the tests never showed positive for either. Of course I

> saw rheumatologists, but they were not of any help (don't even get me

> started about those experiences).

>

> To make a very long story shorter, last spring, when the pain and

> fatigue and mental fog were so bad I literally could no longer

> function, I again consulted a rheumatologist (the third). At our first

> visit, based on history alone, she was suspicious of Stills. The

> diagnostics, which for the first time were extensive, confirmed it.

>

> So now for the first time I have a name for this. Doesn't make it

> easier to live with but at least I have definition.

>

> As I've gotten older (now age 59), my condition has become more

> chronic. The flares last longer and never seem to be in remission for

> long--several weeks to a couple months at best. Of course age has added

> some osteoarthritis to the mix as well. I'm struggling with ways to

> continue earning a living. My hands, cervical spine, and particularly

> my wrists are the the most troublesome. But there is hardly anything

> that doesn't hurt at some point--carpal tunnel, tendinitis,

> bursitis--all the usual.

>

> In the early 90s I decided to become self-employed so I could try to

> manage my health issues and still do productive work. I started my own

> business as an animal behavior consultant (dogs and cats) and since then

> have written two books on retired racing Greyhounds.

>

> Since I am a writer and an animal behavior consultant, my hands/wrists

> and my mind are critical. I'm struggling every day with trying to find

> ways to remain creative and engaged in what I love. Of course, I'm also

> struggling with how to maintain my home, my relationship with my

> husband, and care for my animals--four Greyhounds and two Bengal cats.

>

> My rheumatologist has me on Plaquenil, Mobic, and Tramadol with Vicodin

> for really bad days. I was also on Colchicine, but it caused myopathy

> so that had to be discontinued. It took months for the Plaquenil to have

> any effect, but I have been better for the past few months. The pain is

> under better control-- enough so that I can usually get some

> sleep--something that was not possible a year ago.

>

> Lee

>

>

>

> Visit the Still's Disease Message Board

> http://disc.server.com/Indices/148599.html

>

> The materials and information contained in this message are not intended

> to replace the services of a trained health professional or to be a

> substitute for medical advice of physicians and/or other health care

> professionals. The International Still's Disease Foundation is not engaged

> in rendering medical or professional medical services. You should consult

> your physician on specific medical questions, particularly in matters

> requiring diagnosis or medical attention. The International Still's

> Disease Foundation makes no representations or warranties with respect to

> any treatment, action, application, medication or preparation by any

> person following the information offered or provided within this support

> form.

>

> ion by any person following the information offered or provided within

> this support form.

>

>

>

[Guest guest]

Lee,

Thanks for the resource list. I'll check them out!

in Maine

>

> ,

>

> Thanks for the words of encouragement.

>

> As for your psycho cat, here are some great resources (all by Pam

> )

>

[Guest guest]

Welcome to our group, Lee! I'm so glad you found our site and hope you find it

helpful. And, I'm very sorry to read how long you have suffered.

Perhaps you can direct your Rheumatologist to our site to look at the

medications that are more commonly prescribed for Stills Disease. It might help

you enjoy longer remissions.

My name is Barbara and I've had Stills Disease for almost 18 years. Like you,

there were more vague, poorly understood symptoms from childhood. My disease

made its official debut at age 29. Wow, I don't know if a woman has ever been

happier to see her 30th birthday! Each birthday is greeted with the same

happiness. This disease has taught me the blessing of life.

Again, a hearty welcome!

Warm hugs,

Barbara Gardner

Ventura, CA

[Guest guest]

welcome to the group. forgive my ignoracne what is a dd?

eric abbys dad

<BR><BR><BR>**************************************<BR> AOL now offers free

email to everyone. Find out more about what's free from AOL at

http://www.aol.com.

[Guest guest]

thats not what i was thinking. but now that you mention it....just kidding.

my ww is more than good enough for me. wonderful wife.

eric abbys dad

<BR><BR><BR>**************************************<BR> AOL now offers free

email to everyone. Find out more about what's free from AOL at

http://www.aol.com.

[Guest guest]

DD = dear daughter, . (Get your mind out of the gutter! LOL!)

>

> welcome to the group. forgive my ignoracne what is a dd?

> eric abbys dad

> <BR><BR><BR>**************************************<BR> AOL now offers

free

> email to everyone. Find out more about what's free from AOL at

> http://www.aol.com.

>

>

>

[Guest guest]

Hi ,

I'm glad you asked because I never know what any of the letters stand for. I

know the diagnosis letters, but the rest is gibberish to me. I'm still thinking

of the naked hiker. Then of course the infamous boner conversation. I laughed

so hard that week during that whole thing.

My girls had a fist fight today. Not good. I thought for once I was just going

to pretend I wasn't paying attention and see how far it would go. I will tell

you, that was not one of my brightest plans. One is just about my height and

the other one is only and inch or two shorter than that. By the time I tried to

stop the whole thing it looked like Smackdown in my kitchen. Now I know why my

mother always had a wooden spoon in her back pocket. It would have come in

handy today, at least for effect anyway.

Have a good night.

Terri

Re: Re: Introduction

thats not what i was thinking. but now that you mention it....just kidding.

my ww is more than good enough for me. wonderful wife.

eric abbys dad

<BR><BR><BR>**************************************<BR> AOL now offers free

email to everyone. Find out more about what's free from AOL at

http://www.aol.com.

[Guest guest]

AWWWWEEEE!!!!

Craig's response would be my %*$%*$ wife

<g>

Debi

>

> thats not what i was thinking. but now that you mention it....just

kidding.

> my ww is more than good enough for me. wonderful wife.

> eric abbys dad

>

[Guest guest]

Oh, Terri, nothing like love? Did they make up? My mom used a fly

swatter for a while, then quit when my brother grabbed it away from

her when he was about 4 inches taller than her, lol.

I think I might have you beat, a kid in my daughter's fourth grade

class jumped a substitute teacher and tried to choke her. It gets even

better. After the sub slung off the kid, the teacher stood there for a

couple of minutes try to catch her breath (per 's account),

then goes back to teaching! It gets even better. After teaching a

couple minutes the sub LEAVES THE ROOM WITH ANOTHER STUDENT IN CHARGE

and the kid who tried to kill her WAS STILL IN THERE! I didn't know

anything about it until a day later, Friday evening. Then I call the

school this morning, I told 'em I was upset about the whole thing and

that the school made no attempt to speak with us about the incident. I

was told they had a letter going home today, then get an email late

this afternoon that they aren't gonna issue any public statement...to

protect confidentiality. Yeah, what ever. I emailed back that I should

ask for my daughter's written account to protect her identity.

Debi

[Guest guest]

Gee thanks for dragging me into what my husband and the " other " Penny

started. Yes, chances are that my wonderful husband had his mind in the

gutter, that's where it is most of the time. ROFL!!

Pennie

Abby's Mom

<BR><BR><BR>**************************************<BR> AOL now offers free

email to everyone. Find out more about what's free from AOL at

http://www.aol.com.

[Guest guest]

LOL . He just doesnt want to end up on the couch, so he figured he

better say that.

Pennie

Abby's Mom

<BR><BR><BR>**************************************<BR> AOL now offers free

email to everyone. Find out more about what's free from AOL at

http://www.aol.com.

[Guest guest]

In a message dated 3/6/07 6:32:19 PM Eastern Standard Time,

marie.adams@... writes:

" gutter "

word that it could stand for, or shouldn't I ask since it might start

another " one of those " threads

dd is also a bra size. thus mind in the gutter. thinking about breasts or

sex. but i wasnt. well not from the email. guys are always thinking about

that....lol

eric abbys dad

<BR><BR><BR>**************************************<BR> AOL now offers free

email to everyone. Find out more about what's free from AOL at

http://www.aol.com.

[Guest guest]

In a message dated 3/6/07 8:58:22 PM Eastern Standard Time,

Ploveabby@... writes:

He just doesnt want to end up on the couch

actuly i like the couch....lol. sorry for your pain terri. my cousin had

dd's. she got a redution. feels much better now. yeah yeah back to the

couch. lol

eric abbys dad

<BR><BR><BR>**************************************<BR> AOL now offers free

email to everyone. Find out more about what's free from AOL at

http://www.aol.com.

[Guest guest]

Why the heck didn't the sub call the office for help & remove the child, not

herself!!! Who knows if that kid had a sensory issue or what? They didn't

do anything to trouble shoot so it doesn't happen again?

Marie

>

> Oh, Terri, nothing like love? Did they make up? My mom used a fly

> swatter for a while, then quit when my brother grabbed it away from

> her when he was about 4 inches taller than her, lol.

>

> I think I might have you beat, a kid in my daughter's fourth grade

> class jumped a substitute teacher and tried to choke her. It gets even

> better. After the sub slung off the kid, the teacher stood there for a

> couple of minutes try to catch her breath (per 's account),

> then goes back to teaching! It gets even better. After teaching a

> couple minutes the sub LEAVES THE ROOM WITH ANOTHER STUDENT IN CHARGE

> and the kid who tried to kill her WAS STILL IN THERE! I didn't know

> anything about it until a day later, Friday evening. Then I call the

> school this morning, I told 'em I was upset about the whole thing and

> that the school made no attempt to speak with us about the incident. I

> was told they had a letter going home today, then get an email late

> this afternoon that they aren't gonna issue any public statement...to

> protect confidentiality. Yeah, what ever. I emailed back that I should

> ask for my daughter's written account to protect her identity.

>

> Debi

>

>

>

>

>

>

> Autism_in_Girls-subscribe

> ------------------------

> Autism_in_Girls-unsubscribe

>

[Guest guest]

Now...I'm curious. I knew dd was dear daughter, but what's the " gutter "

word that it could stand for, or shouldn't I ask since it might start

another " one of those " threads. I have to agree that it was really funny

about the boner thread!

Marie

>

> thats not what i was thinking. but now that you mention

> it....just kidding.

> my ww is more than good enough for me. wonderful wife.

> eric abbys dad

> <BR><BR><BR>**************************************<BR> AOL now offers free

> email to everyone. Find out more about what's free from AOL at

> http://www.aol.com.

>

>

>

[Guest guest]

Oh silly Marie, DD as in double D as is bra size. As in that is what I wear and

although it may please some men to look at, it is not all that fun to carry

around daily!!

Terri

Re: Re: Introduction

Now...I'm curious. I knew dd was dear daughter, but what's the " gutter "

word that it could stand for, or shouldn't I ask since it might start

another " one of those " threads. I have to agree that it was really funny

about the boner thread!

Marie

>

> thats not what i was thinking. but now that you mention

> it....just kidding.

> my ww is more than good enough for me. wonderful wife.

> eric abbys dad

> <BR><BR><BR>**************************************<BR> AOL now offers free

> email to everyone. Find out more about what's free from AOL at

> http://www.aol.com.

>

>

>

[Guest guest]

I could be off-base, but I'm thinking the alternate usage was " dd " as

a bra size.... am I right, Pennie? ;-)

> Now...I'm curious. I knew dd was dear daughter, but what's the

> " gutter "

> word that it could stand for, or shouldn't I ask since it might start

> another " one of those " threads. I have to agree that it was really

> funny

> about the boner thread!

>

> Marie

>

>

>

>>

>> thats not what i was thinking. but now that you mention

>> it....just kidding.

>> my ww is more than good enough for me. wonderful wife.

>> eric abbys dad

[Guest guest]

LOL!!!!!!!!!!!!!!!!!!!!!!!!!!

Shanna

cathylynn2 wrote:

I could be off-base, but I'm thinking the alternate usage was " dd " as

a bra size.... am I right, Pennie? ;-)

> Now...I'm curious. I knew dd was dear daughter, but what's the

> " gutter "

> word that it could stand for, or shouldn't I ask since it might start

> another " one of those " threads. I have to agree that it was really

> funny

> about the boner thread!

>

> Marie

>

>

>

>>

>> thats not what i was thinking. but now that you mention

>> it....just kidding.

>> my ww is more than good enough for me. wonderful wife.

>> eric abbys dad

---------------------------------

The fish are biting.

Get more visitors on your site using Yahoo! Search Marketing.

[Guest guest]

I just figured you knew him better than anyone..... after all, you

ARE his " ww " !

)

> Gee thanks for dragging me into what my husband and the

> " other " Penny

> started. Yes, chances are that my wonderful husband had his mind

> in the

> gutter, that's where it is most of the time. ROFL!!

>

> Pennie

> Abby's Mom

[Guest guest]

,

I think if I got a reduction I would end up on the couch!

Terri

Re: Re: Introduction

In a message dated 3/6/07 8:58:22 PM Eastern Standard Time,

Ploveabby@... writes:

He just doesnt want to end up on the couch

actuly i like the couch....lol. sorry for your pain terri. my cousin had

dd's. she got a redution. feels much better now. yeah yeah back to the

couch. lol

eric abbys dad

<BR><BR><BR>**************************************<BR> AOL now offers free

email to everyone. Find out more about what's free from AOL at

http://www.aol.com.

[Guest guest]

At least you are of honest to this and I to hear that men think of the

sex things more often then womans and that this begins much early for

them and that it is of why some do not learn of academics as quickly as

womans. I to hear that otehrs will hyper focus to hands on learning of

machanical things to distract of them from the sex things such as men

like to work on cars and things of this. I to wonder why they think of

it so much as to me it is not a thing that comes to my brain to think

on but this is of part of being a male. I to forget how often it was

stated to be but men think of sexual things at least a few times in

every hour per waking moment. I to think that is not normal but this is

what was told about mens thinkings. I to like that you were of honest

to admit you were not thinking of sex at that moment of the email . I

to also be to heared and associate the words in the gutter to mean one

being drunk and falling into the sewer drains or gutters and so lacked

knowing it can be of used in other ways? so a person who thinks of sex

is felt to be a person in the gutter too? you are of a funny

person. I to be of asking to begin to call of you our gutter man here.

Sondra

> " gutter "

> word that it could stand for, or shouldn't I ask since it might start

> another " one of those " threads

>

>

> dd is also a bra size. thus mind in the gutter. thinking about

breasts or

> sex. but i wasnt. well not from the email. guys are always

thinking about

> that....lol

> eric abbys dad

[Guest guest]

This kid isn't disabled. said that just before he did it he

said, " Hey, watch this, I'm gonna choke the teacher... " then jumped her.

Debi

>

> Why the heck didn't the sub call the office for help & remove the

child, not

> herself!!! Who knows if that kid had a sensory issue or what? They

didn't

> do anything to trouble shoot so it doesn't happen again?

>

> Marie

>